Advance Care Planning: An opportunity for person-centred care for people living with dementia

Abstract

Many people want to be able to plan ahead, so that if in the future they cannot make decisions or do things, their wishes will be known. This is called Advance Care Planning (ACP). Although it is part of official NHS policy (NHS End of Life Care Planning), ACP is hardly ever done, and it may become more difficult once a person has memory problems. In the UK, there is very little research into ACP. By the time someone has signs of dementia, families often become involved. We are uncertain how this affects ACP and the views of the person with dementia, particularly with the new Mental Capacity Act which allow families to comment on health, as well as financial, issues. Our study will be exploring the area of ACP, especially in dementia, by • looking at the experience of other countries through a systematic review of the existing literature; • finding out what people who have carried out ACP in this country think through interviews and focus groups; • considering what factors might help professionals to encourage the process of ACP in practice; and • looking at how ACP might be done better for people with dementia. The ultimate aim of our study is to produce guidance on ACP for both people with dementia, their families and health care professionals.